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Waiting for care in emergency departments can be exhausting for cancer patients, but not all visits are necessary.

People dying of cancer are frequent visitors to emergency departments, but many of the trips may be avoidable, a Canadian study suggests.

For people dying of cancer and their families, visits to emergency can be disruptive, distressing and exhausting, with long, uncomfortable waits for care, researchers say.

This week's online issue of the Canadian Medical Association Journal includes a study of how often and why people dying of cancer in Ontario visited emergency.

Between 2002 and 2005, 91,561 people died of cancer in the province, radiation oncologist Dr. Lisa Barbera of the University of Toronto and her co-authors found.

"Ideally, the symptoms of a patient near death would be adequately controlled and the patient would be cared for in the setting of his or her choice, rather than on an emergency basis," Barbera and her co-authors wrote.

Of the people included in the study, 75,759 patients visited emergency during their final six months of life, with nearly 37 per cent making one visit. Multiple visits were less common, falling to almost seven per cent of patients making six or more visits, based on the analysis of the Ontario Cancer Registry and provincial demographic and emergency department databases.

The most common reasons to visit emergency both in the last six weeks and last two weeks of life were:

Abdominal pain.

Shortness of breath or dyspnea.

Pneumonia.

Malaise and fatigue.

Fluid in the chest.

Diagnoses involving pain accounted for 9.4 per cent or 18,267 visits during the final six months and 5.1 per cent or 1,857 visits made during the final two weeks of life, the researchers said.

Extra support reduces ER visits

Avoidable reasons for visits included constipation, technical or mechanical reasons such as lab exams, attention to dressings or sutures, adjustment of a urinary catheter or prescription refills, which together accounted for 2.8 per cent or 5,442 visits during the final six months.

Clinical descriptions of patients or families no longer "coping" were common, and likely included diagnoses such as malaise and fatigue, need for palliative care and perhaps dehydration, the researchers said. Together, these accounted for 5.1 per cent or 9,902 visits during the final six months of life. In the final two weeks, this combination surpassed pain in ranking at 8.4 per cent or 3,070 visits.

"Patients and families should do their best to educate themselves about the goals of treatment, prognosis and the common problems that they might encounter and how to deal with them," Barbera suggested in an email. "This will help them to prepare for the patients' death and ensure they have maximum support to optimize the care outside of the hospital," such as at home.

While the majority of visits made during the final two-week period led to admission, this result does not mean these patients could only be managed in a hospital, the researchers said.

"Instead, these patients require either additional support to remain at home or direct transfer to a palliative care unit or residential hospice," the study's authors wrote.

Value of palliative care

A high-quality palliative care team could address symptoms such as pain, shortness of breath, nausea and vomiting, constipation and fatigue.

Palliative care teams of nurses, doctors, social workers and volunteers focus on optimizing the quality of life of patients with advanced diseases such as cancer.

Palliative care covers more than providing comfort, offering prevention and relief of suffering through early identification, impeccable assessment and treatment of pain and other problems, as well as physical, psychosocial and spiritual support including bereavement support for loved ones.

To prevent or avoid emergency visits, control of symptoms like pain, shortness of breath and constipation is critical, Barbera said.

For doctors and nurses providing palliative care, it would help if they shared standardized assessments and practice guides.

Specific education could help family members and caregivers to anticipate, identify and cope with a situation as an expected crisis rather than an emergency, the researchers suggested.

For example, Cancer Care Ontario has a provincewide program to screen patients for shortness of breath or dyspnea and other symptoms together with guidelines to assist practitioners, Barbera said. Study co-author Dr. Deborah Dudgeon of the palliative care program at Queen's University in Kingston, Ont., is involved in a dyspnea clinic, which includes an educational component.

The study was supported by the Institute for Clinical Evaluative Sciences, which is funded by the Ontario Ministry of Health and Long-Term Care.